Community Reputation

About kvanrens1

Well, after having a discussion with her and her Dad, we (they) decided now was not the time to try eliminating all dairy. It probably is the culprit. We will restart the probiotics. We had her on them the first year of being gluten free. Compared to where we were, the gluten free diet has been nothing short of a miracle for her and us
She says her stomach aches and other issues are not a big concern for her given how she felt before going gluten free. If it gets to be a bigger issue, we will revisit. Thanks for all your comments and suggestions!!!

Thanks Stephanie. That is a very good suggestion. I think that is where we should go next but the girl LOVES cheese in any and all forms. She will not be very happy.
I have also been wondering about the FODMAPS diet. I wonder if that would help her.

It has been a while since I posted. Our daughter is doing great on the gluten-free diet. We recently celebrated her two year anniversary of being gluten free.
Just to catch you up on her history (sorry this is long). She was diagnosed as growth hormone deficient when she was around 7 years old. She was too underweight to start growth hormone treatment. Endocrinologist suspected a food absorption issue so we were referred to ped GI. Endo did basic celiac panel (not full panel) in her initial testing and it was negative. Ped GI put us on an aggressive eating schedule with pediasure supplements. Feeding tube is suggest but I decline. She gained weight but her stomach pain got worse and worse during this time. She was diagnosed with mild pancreatic insufficiency (fat malabsorption). Since pancreatic insufficiency is rare in children, they suspected cystic fibrosis. She had a sweat test that was not a clear negative (borderline range) so she had a cystic fibrosis gene test which thankfully ruled out that diagnosis. She starts missing school due to stomach aches. She often curls up in a ball in school and home due to stomach pain. She starts having behavior issues - grumpy, moody due to near constant pain. She is on 4 GI medications (omnezeprole, creon, mirlax, periactin) at this point and nothing is working. We switch Ped GI. She has an MRI of her pancreas and all is normal. Later, she has a upper GI scope that shows chronic gastritis and is negative for celiac disease and h.pylori. Ped GI suggests it is "functional abdominal pain" but given evidence of pancreatic insufficiency, gastritis, constipation, and almost constant stomach aches, I did not accept that diagnosis. One day I just googled all her diagnosis together (added the individual diagnosis together) and got celiac disease. I know there is not medical basis their testing methods but I needed a piece of paper to show we needed to try a gluten-free diet for her and used Enter*lab testing. Her numbers were very high for gluten sensitivity and she has DQ7 and DQ9 genes.
We put her on a gluten-free diet. Within a couple of weeks, stomach aches were much better. Her mood improves. We stopped the periactin. Constipation was better. She gained a couple of pounds. Within 5-6 months she was retested for pancreatic insufficiency. No longer an issue so we were able to stop the creon. We switch back to our original Ped GI. He did not "believe" she could be gluten sensitive and suggested that we put her back on gluten to have her retested for celiac disease. I declined. At her next follow up appointment, he suggested that I put her back on gluten because she is still underweight (she is finally at a healthy level BMI for the first time in her life and at the 3% level on weight charts). He said that I was omitting a food group without a medical reason to do so. He gets very frustrated with me because I "seem to have all the answers." He told us to call us if we needed to but did not schedule a follow up appointment. So she is without a Ped GI at this point.
After two years on the gluten free diet, we have seen so many positive changes. She takes an OTC omnezeprole daily. Stomach aches occur once or twice and week and are mild. She still has occasional constipation, painful gas, and loud painful belches. While she is finally at the 3% level on weight, her weight gain has tapered off and still a concern (10.75 years old and weighs 52 lbs). She is adopted from China and I believe she is genetically going to be small. We are very strict with the gluten-free diet. We usually take food with us to restaurants. I prepare her lunch and snack for school. She knows how to read labels to look for wheat, rye, and barley. She is also lactose sensitive so she is lactose free as well but we are a little lenient with the lactose free part. We will let her have ice cream when she takes lactaid. We try to only use the Kraft cheese that says 0g lactose or cheese that has 0g sugar.
Since she is still having some GI issues, could there be something else still going on? I would have thought we could give up the acid reflux (gastritis) medicine at this point but the couple of times we have stopped it, her stomach pain and burping increases so we put her back on it. Is there something we are missing? Should we find another Ped GI?

We don't drink sodas and rarely give her orange juice because of the acid reflux. She does not like spicy foods so that is not a culprit. I do feel it is probably another food intolerance. She eats lots of lactose free cheese - wonder if it could be casein? She could also eat her weight in fruit. Fructose could be another consideration. She has had to give up so many of the foods she loves, I would hate for her to have to give up cheese and/or fruit.
She is underweight (50 lbs at age 10) and it is already a challenge to feed her with the gluten free and lactose free diet.

Our NCGI daughter has been gluten free since March 2012. She is doing so well since going gluten-free. She has gained weight, no more painful stomach aches, she is growing, and most importantly she feel fantastic. She has been able to stop so many medications but we can't seem to get over the GERD/acid reflux that results in painful, loud burping. She is on omnezeprole (spelling?). I would love to get her off this one last medication. Any tips? It is such a puzzle to me because all her other GI issues have resolved since going gluten-free.
Thanks!
K

Her stomach was still hurting this afternoon so it was probably gluten. Just disappointed for her because we are so limited in our small town that we usually take food for her when we eat out. We have a PF Chang's and Mellow Mushroom around an hour drive from us. She does fine at Mellow Mushroom so guess we will have to stick to Mellow Mushroom. Hate to see her in pain and miserable.
Thanks!

Yes, it was the same PF Chang's both times. I told the server that she had gotten sick the last time we ate there and he said his wife eats gluten free too. He was sure to point out the signature plates when he brought out the food. Just a puzzle because I know PF Chang's is one of the "good guys" that really try with the gluten-free preparation. I was just wondering if it could be something else. She eats egg all the time so that should not be it. Anyone know what types of oil they use? Do they use MSG?

My 9 year old NCGI daughter ate at PF Chang's in August 2012 for lunch. By that afternoon, she was so sick that she did not make it to the toilet on time. Very embarrassing for her. We have not been back until yesterday. She ordered the same thing as last time. gluten-free fried rice and gluten-free singapore noodles. She did not eat much of the noodles mostly the fried rice. I leave her at the table with breakfast while I go get ready and this morning, when I checked on her she had not finished her breakfast. When I asked why it was taking her so long to eat breakfast, she broke out into tears (she gets very emotional on gluten because her stomach hurts) and said that she had been in the bathroom for a while.
Since she had the exact same foods as last time and they came out on the signature plates indicating gluten free, is it gluten or could she be sensitive to another ingredient that they use in their foods? Any BTDT?
Just trying to figure out if PF Chang's is yet another place that she cannot eat
Thanks,
Kristy

Just saw this on Yahoo - thought I would share. Great idea if your child is in the care of others.
http://gma.yahoo.com/blogs/abc-blogs/dont-feed-t-shirts-calm-parents-allergic-kids-100406887--abc-news-health.html
Kristy (by the way, not endorsing in any way)

My daughter is one of those that is non celiac gluten senstivity. Her blood tests (incomplete panel several years ago and never retested), endoscopy, and genetic tests were all negative for celiac yet she was very, very ill and in near constant pain. She has been diagnosed with failure to thrive, pancreatic insufficiency (fat malabsorption), lactose intolerant, unexplained growth hormone deficiency, constipation, and chronic gastritis. The GI doctors were stumped and prescribed more medication with each new symptom. Out of desperation and wanting our daughter to feel better, we tried the gluten free diet last March. She looks and feels so much better. It has been amazing to see the changes in her over the past year. So many of her medical issues have resolved. I really believe that if she continued gluten in her diet her health would have deteriorated. Thank you for this article.

We have had the gene testing for our daughter through Enterolab. It was helpful for us to know that she does not have the main celiac genes and fits with her negative celiac tests. Her official diagnosis is non celiac gluten intolerance.
The test is a quick swab of the inside of the cheek and not invasive. Enterolab does not provide subunit info. Our daughter is DQ7 and DQ9. Some research indicates that DQ7.5 may be a celiac gene but we did not get that level of information from Enterolab.

Agreed IrishHeart. Given how bad she felt and how her little body was reacting (pancreatic insufficiency is very rare in children; pain so debilitating that she would get disoriented), I just don't want to miss anything important in her follow up care. I no longer trust the docs to be experts and want to go in educated. If she needs a CBC and CMP, I want to know that going into our next appointment. The last appointment we only saw the GI nurse and this time we see the GI Doc.
Thanks everyone!

Follow Us

Like us on Facebook

About Us

Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!